A Journey of Living with Cerebral Palsy

thoughts

*This post was originally written in my journal, which will make more sense as you read, but I wanted to share it here too.*

The amount of unfinished journals I have lying in the crooks and crannies throughout my apartment is too numerous to count. Due to my love of writing, every year as a kid for Christmas or my birthday, I’d inevitably be given a journal from a family member or friend. I’d write in it for a day or two, and after a week went by, the journal got lost among the many books I wanted to read, never to be seen again.

Over time, as technology has evolved, so did the method of my writing. Gone were the days of pen and paper and in came the days of online journals and blogging. The fact that I can’t remember when I last wrote in a journal (except for now, obviously) is sad. Yet, here we are.

Over the past few months, I’ve been pretty stressed. But when you consider that I’ve been busy with wedding planning, starting a new job in October of last year, and the daily struggle of not only surviving, but thriving, the stress is understandable. Self-care needs to be a priority right now. I’ve told myself that and my therapist has told me that, but it doesn’t always stick.

I work in the helping profession, and in my case, “I love helping others” translates to “I help others long before I help myself.” However, I also know, thanks to my advanced education in counseling and social work, that in order to be of use to the people I’m helping, I have to make myself a priority. Easier said than done, right?

But, that’s where journaling comes in. A few days ago, I was mulling over my typical go-to self-care activities like taking a bath and listening to music, only to realize that those activities don’t get me out of my head enough to allow me to calm down, which I need these days. Then my therapist mentioned journaling, and I said, “But I only feel like I can write a blog post when I have something to say.” Then my therapist said, “What about writing in a journal that no one but you will read?” As crazy as it sounds, that hadn’t really crossed my mind.

For the past 7 years, blogging has been my go-to in terms of writing, which has been great. Along the way, I’ve become part of a wonderful community of fellow writers that I love. However, there is something to be said for writing with a pen and paper vs. typing. Honestly, I think part of it is because I’m at a computer most of the day at my job, so when I finally get home at the end of the day, sitting in front of the computer is the last thing I want to do, even if it is to write. The other part though is the environment. On my computer, there’s email, Facebook, YouTube, Pandora, and all sorts of other distractions. But with a pen and paper, it’s just me, my thoughts and a blank page. It’s quiet, serene. As I sit here writing longhand I am very mindful of the peace I feel internally. I’m not distracted, I’m not worried about what anyone will think or say…because the only person these words will benefit in this exact moment is me. For the first time in months, I feel at peace. I feel a sense of calm I haven’t felt in a long time.

And that, my friends, is what it’s all about. Getting back to writing because of the way it makes me FEEL…authentic, free, and the truest version of myself I’ve ever known. Not writing because of what other people want to read, but because it’s what I need in order to be the best version of myself that I can be. And if I have the option to be that person, shouldn’t I take it?

I first started blogging in 2011 when I was a sophomore in college. At that time, I didn’t know what I was doing. I just wrote whatever came to me. This included life as a college student, music, books, travel, and eventually, my disability. There are days when I miss that blog, lifeintheblueridges. I miss the freedom of it, the peace of mind. I made connections with hundreds of people, some of which I still have today (I’m talking to you, Arianna and Cassie, if you’re reading this). I miss the level of connection and community I felt within the blogosphere. And for those of you who have stuck with me since the beginning, thank you. I am grateful, honored, and no amount of words could convey just how much you mean to me. My first blog felt like home, but over time, as I graduated from college and moved on to graduate school, my blog was no longer at the forefront of my life. At the time, I didn’t give it much thought. But now, thinking back, I regret not making it a priority. I get that life comes first and it’s okay that I put my career first, but writing should have been in the running for first place too. It’s always been my haven, my safe place, and the one place I felt 100% myself, but then I stripped it away without even really thinking about what I was walking away from.

When I graduated from college, I created this blog. I had read somewhere that finding a niche in the blogging community could increase traffic to your blog. So I did that for a while. I no longer wrote daily. It was a tiny accomplishment if I managed to write even one post every few months. I primarily wrote disability-related posts. And while some of the posts were incredibly cathartic, I didn’t feel the same level of community and connection I used to when I first became a part of this community back in 2011. I felt like I was writing for other people, rather than myself. And I know from experience what a tricky path that is to go down. It puts you at risk for losing yourself, and I think that’s what may have happened with me over time.

I don’t know if the blogging community has changed or I have. Honestly, it’s probably been a mixture of both. I know one thing, though. I miss it. I miss coming to an empty page daily and just writing whatever came to me as I did when I first started blogging. Sometimes, that was just a music video or a quote from a book I was reading, but it was me. It was authentic. My writing ebbed and flowed with my moods, the seasons, and life in general. Back then, I didn’t just post when I felt like I had something to say. I posted even on the days where I felt like I was trudging through mud and had no idea where to even start. I wrote anyway.

More than anything, I wrote for me. I wrote what I was feeling and what was in my heart. I didn’t have moments as I do now where I think, “What are other people going to think of this?” and “What kind of lesson or story am I trying to get across with today’s post?” Though there is nothing wrong with posing those questions before sitting down in front of the blank page, in my experience, it’s limiting. It put me in a box. A box that initially was comforting. However, eventually, I just couldn’t do it. I’m realizing now that those limitations kept me closed off from the community I so badly wanted to immerse myself in.

So, today, as my friend Arianna would say, I’m making the choice to show up. I’m pushing away thoughts of “Will others like this?” or “Will this post drive traffic to my blog?” As I’m learning, those questions don’t matter. Writing is what I love. I first started blogging solely for that reason. And I think it’s common to drift away from reasons you may have started on a journey in the first place. It was never about others. It was about me, writing from my heart, and feeling grateful when others connected with my words.

So even though I don’t know where my blog will go from here, I know one thing. It will be 100% authentically me. If we can’t be authentic and 100% ourselves, what’s the point, anyway?

I received physical therapy every week of my life until I was 16 years old. So, me and PT have quite a history. And to be honest, it isn’t all that pretty. For me, PT was focused on getting me as independent as possible and as mobile as I could possibly be. That meant learning to walk with a walker, then crutches, and eventually independently. With a physical disability, that’s no easy feat. I didn’t walk in any sense until I was 5 or 6, I think…so I was way behind my peers in that respect. However, that’s where PT came in…to provide me with the tools I needed to reach the same level of functioning as my able-bodied peers. As you can imagine, it was hard work, it was painful, and I left every therapy session having cried at least once (or at least that’s how it felt).

The trauma of physical therapy didn’t surface until I had my first surgery at the age of 11. Following my first surgery, after being in long-leg casts for 8 weeks, physical therapists were ready to get my legs moving. Try keeping your legs board-straight for 8 weeks and then being asked to bend your knees. It’s a level of pain I wouldn’t wish on my worst enemy. One of the three most vivid memories I have is one particular day in physical therapy at Shriner’s Hospital for Children in Greenville, SC, following my first surgery. The physical therapist was determined to get my knees to bend. However, up until this point I had fought her every step of the way. She ended up placing a blue-padded bench right behind my knees in the hopes that gravity would do it’s job over the course of an hour and by the end of therapy, my knees would be bent over the bench. Suffice it to say, gravity didn’t win. I held my legs in the air for 90% of my PT session that day. Eventually, the physical therapist put her hands on my knees and pushed down. Because I had held my legs up for almost an hour, down they went and out came my screams. One minute my legs were in the air, pain-free, and the next…my body went into overdrive trying to process the pain that was splitting me open from inside. I cried and screamed so loud and for so long that I remember a nurse coming in asking if everything was okay. Until that moment, I didn’t understand the concept of a blood-curdling scream…and I also didn’t understand what it meant to feel such an intense pain that when you open your mouth no sound comes out at all. Now I know better.

That PT moment occurred at the age of 11. I am now 25, and I can still go back to that moment in my mind in a matter of seconds….and when I do, the tears come, and I can’t stop. I cry for the pain I felt, the level of fear and anxiety that was coursing through me, and the fact that at the age of 25, I can so easily place myself back in that moment without even blinking. To put it bluntly, physical therapy has essentially traumatized me. It still holds a lot of power over me, I still have nightmares, and I still have really intense reactions towards PT.

A few years ago, my doctor suggested I go back to PT again. “It won’t be like last time. This time, when you say stop, they will.” See, as a child in PT, my voice didn’t matter that much. If I said stop, the pain continued. The physical therapists kept pushing. They had to in order to help me get to the point I needed to be. Therefore, a few years ago, when my doctor said it would be different, I didn’t believe him. Even when the physical therapist said, “You’re an adult. You’re in control now,” I had a very hard time believing her. After only one PT session as an adult, I started having panic attacks. Even though I was in a different place, in my mind I was an 11-year-old girl in the PT room of Shriner’s Hospital. I panicked. I couldn’t breathe, and I felt like I was dying. In short, I had a panic attack.

I have not been back to physical therapy since my previous experience as an adult caused panic attacks. However, I’ve reached a point in my life where I feel like I at least need to try going back. I am utterly terrified and just the thought of it makes my heart race and my breath become rapid. How I’m going to go through with it, I seriously don’t know. But I have to try. I owe myself that much. And I just hope the physical therapist doesn’t negatively respond to my panic attack. I can’t have that happening again.

In the world of disability, there is a term known as “acceptance,” as in….acceptance of your disability and all that it means for you. I’m going to be honest. I’m 25, and I’ve had Cerebral Palsy since birth, but there are still plenty of days where I get just plain frustrated with my CP. Typically, most of my frustrations are aimed at the outside world and the lack of understanding of disabilities (physical and mental) in general. Yes, there are a lot of positive changes for the disability community, like the Americans with Disabilities Act and the Individuals with Disabilities Education Act. However, there is much more work to be done, and we can’t stop here. No matter how positive your outlook, 100% overcoming societal stigma experienced by being a member of the largest minority in the world is close to impossible (at least in my opinion), and for me, that is the hardest thing about being disabled. Living my day-to-day life with CP is a walk in the park compared to societal stigmas and societal responses to having a disability. I don’t know how many times I’ve gotten pissed because someone has parked in a handicapped spot without a handicapped placard or someone has parked in the access lane next to a handicapped spot and/or parked in front of an access ramp because they are “just waiting on someone and they’ll only be a few minutes.” Because, news flash, those spots and accommodations are there for those that need them. Just be respectful and realize that.

It’s safe to say I haven’t reached the point where I’ve fully accepted my disability. However, I’m doing much, much better with it now than even just a few years ago. I’ve gotten more comfortable expressing my needs and asking for help when I need it. I’ve started to better understand the reality of getting older with my disability as opposed to still thinking I can do the things I did even 5 years ago. I’ve settled in, in a sense. For some, that may look like giving up. But trust me, I’m far from it. I’m way too much of a fighter to stop trying to have the most fulfilling life possible. Trust me, those who know me know that “giving up” does not even exist in my vocabulary. Yes, being disabled is just a piece of who I am, but from my standpoint, it’s a pretty big piece simply due to how much it impacts me on a daily basis.

Best of all, I’ve reached a point where I actually want to utilize my experiences of living with CP to connect with and help others. That used to not be the case. I used to want to get as far away from my disability as I could. Simply put, I was in denial, and I was in a space where I just felt like I couldn’t process all the emotions that come with living with a disability. Day by day, I’m processing through those emotions. And best of all, processing all those feelings is best done for me through writing. I have a feeling that’s partly because not only do I love to write, but I am hopeful that my words will connect with someone else, even if only in a small way.

So, have I fully accepted my disability? Likely not. And why do you ask? Because there is always, always more work to be done on ourselves and more thoughts, emotions, and situations to sift through. I’m content with that, though. As long as I’m processing through things and changing, I’m growing and ultimately becoming the person I’m meant to be. And for me, there’s nothing better.

I was driving home from work tonight trying to determine what topic to touch on in today’s post. So much has happened since I was last blogging regularly that it is hard to even know where to begin. At the same time, I know exactly where to start: smack dab in the middle. Because that’s life. It’s not linear. It just happens, and how we handle situations can all be seen in how we respond to them.

To put it bluntly, my mobility has been decreasing over the past few months. But first, let me paint the whole picture. As a child, I utilized canes and walkers and braces on my feet to help me walk. However, for the majority of my life, I have walked unassisted…until now. A few months ago, I noticed I was having some trouble walking, or put more plainly, I was “freezing up.” Here’s the thing. I can walk, but I have fallen so frequently as a result of my CP that it is almost as if my mind keeps that thought at the forefront every time I take a step. You know what they say….don’t think about pink elephants, but what do you do? You think about a pink elephant anyway. Anyway, what I’m trying to say is that I feel like every time I go to take a step, I’m telling myself “don’t fall, don’t fall,” but as soon as that thought process starts, guess what happens? I’m typically on the ground within a few minutes. Therefore, that thought process in itself has made it hard to put one foot in front of the other without some kind of assistance. Even in moments where I think I’m okay, my mind reminds me again, and I can’t get it out of my head. It shouldn’t be a big deal. I fall all the time as a result of my CP. I should be used to it by now, but alas, it’s not really something you get used to, no matter how much it happens.

Coming to the conclusion that I needed something to help me be more mobile and independent was really hard. I fought it for a long time. I’m still fighting it now to be completely honest. But I reached a point where I realized: if I am going to safely get from place to place independently, I need some help (side-note: I hate, HATE asking for help. I need to get better on that). Anyway, a few months ago, I started using a walker (named Hugo because that’s a way better term). It sucks, and I still hate it, but Hugo helps me get from place to place without having to wait for someone to come along and help me get from the side of a building to my car, which was less than 10 feet away. Yes, that scenario really happened. Once I waited as long as an hour for someone to exit a building before I finally just gave in and crawled on my hands and knees to my car. It was insanely humiliating, but I didn’t really have a choice at that point. The longer I stand still, the stiffer I get, and the more difficult it is to move. And you know what? That scenario I mentioned…it didn’t just happen once. It happened at least 5 to 10 times before I realized I needed to figure something out. In case you haven’t guessed, I’m stubborn…and I value my independence more than anything. There’s something you must understand, though. For my entire childhood, the number one goal was walking independently, and I got there. I did it! So now…having to use something to help me get around makes me really mad. I feel like I’m moving backwards, even though I know that’s not the case. I’m 25. I shouldn’t need a freaking walker. And yet, here we are.

While I know Hugo helps me get from place to place, already being at a point where I have to use him sucks. See, I thought I had more time. I didn’t know this was going to hit by the time I was 25. And truthfully, the hardest part is thinking about what other people think. Even though in my mind I know others don’t care, I’m judging myself for it. I’m caring about what I think about the entire situation. And in case you didn’t already catch on to this, I’m really hard on myself. Internally, I keep tearing myself down for having to use Hugo. I feel guilty I think. Guilty I couldn’t have done more to prevent it. And just angry at the image of it. Walking with a walker was not something I ever imagined for myself. I thought I skipped that part. However, I know from experience that ruminating on “What if’s” gets you nowhere. Still…stopping that train of thought is way easier said than done. I’m trying, but I know it’s going to take time.

As of right now, I’m making a conscious decision to allow people to help me more and to actually ask for help when I need it. It’s probably once of the hardest things I’ve had to do. It’s not easy to change thought patterns at the drop of a hat, but I know one thing. I have to start somewhere, and I know my body will thank me someday for giving it the rest it needs. When I’ll start that? Who knows. I’ll let you know when I get there. At this point, I’m just taking it one day a time. That’s all any of us can do.

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